Isabelle McKenna, diagnosed
with Alzheimer's disease 13 years ago, is shown with her daughter Maureen
in the iconic image for The Forgetting. (Photo: Twin Cities PTV.)

Proud memory: The Forgetting

Originally published in Current, June 21, 2004By Steve Behrens

Strange how a harrowing program about a nightmare disease can become a major
feel-good event for public TV.

Though some viewers said they didn't like seeing the difficult realities
of The Forgetting: A Portrait of Alzheimer's and its stories of three
families and medical researchers struggling with Alzheimer's disease, many
more, paradoxically, thanked public TV for showing it to them in January.

Along with the bad news, the program brought viewers some relief — information
about a disease they didn't understand and hope about the help they didn't
know they could get.

"The more information that's out there, the more people can say, 'Grandma
was really mean today, but that's the Alzheimer's talking,'" says Chris
Siefert, outreach director at Montana PBS in Bozeman.

A repeat of the broadcast June 16 [2004] — unexpectedly timely with
President Reagan's death 11 days before — added an audience two-thirds
the size of the debut broadcast Jan. 21. The debut averaged a 2.2 rating and
the repeat 1.5. Local ratings in January ran as high as 6.8 in Twin Cities
and 4.7 in Salt Lake City. The program's website on PBS.org drew 1 million
page views in a week.

Critics as well as viewers applauded the effort.
"Ever wonder why we still need PBS in a world of 500 channels?"
pondered critic Robert Bianco in USA Today. "In part, it's because
no other network would do The Forgetting: A Portrait of Alzheimer's . . ."

It felt right to public broadcasters. The program and outreach project "is
exactly what we in PTV should be doing," wrote Larry Smith, g.m. of KUED
in Salt Lake City.

Since the January broadcast, Executive Producer Naomi Boak of Twin Cities
PTV has had many gratifying responses to the project. "The best of all,"
she says, "is seeing how many people got off their butts and asked for
help." On that January night, the national help line of the Alzheimer's
Association, a major partner in the outreach project, got 2,400 calls, when
they'd normally handle 75, she says.

Many additional people called phone banks at public TV stations — 300 at
Arkansas ETV and 1,300 at Houston PBS. Volunteers at Maryland PTV answered
calls for two hours after the program ended, says Mike Splaine, director of
advocacy programs for the Alzheimer's Association, who worked the phones.

Splaine remembers people calling with thanks for the broadcast and many who
worried about Mom and wanted information. Those were like "411"
calls, he says. "The real hair-raising ones were the 911 calls"
— from people who needed immediate help. One woman said she goes driving
and sometimes forgets what stop signs are. "That was a scary call."

Without an affecting broadcast, the callers never would have picked up the
phone, he says. The 90-minute doc by writer/producer Elizabeth Arledge not
only sketched recent medical research but showed the Fuget, Noonan and McKenna
families coping with the disease. "The family story in The Forgetting is, I think, what gives people hope — if there is something wrong with
me, maybe my family will rally around me like the Noonans," says Splaine.

Stations' outreach efforts — many funded by MetLife Foundation and
CPB — went after viewers who particularly need help, says Boak. "With
a disease like Alzheimer's, which is so isolating and so misunderstood by
professionals and lay people alike, information and resources are critical."

"It's not just an informational piece, it's an impactful piece,"
says Siefert in Montana. The state network worked with extension agents in
17 counties, who screened the program in community centers.

She remembers sending a cassette to a man in the tiny town of Chinook, who
showed it to caregivers at the nursing home where his wife lived. After she
died, he wanted to start a support group for other caregivers. "You learn
so much in this journey, you want to share it," says Siefert.

Boak says her own father-in-law, whose wife is in a middle stage of Alzheimer's,
"practices the John Wayne school of caregiving," but after seeing
the program he made sure his friends saw it, too. "For this Connecticut
Yankee to do that was a real cry for help."

Of 30 stations that received outreach grants, 23 produced companion programs
emphasizing local Alzheimer's resources, according to a project evaluation
commissioned by the National Center for Outreach. In Warrensburg, Mo., KMOS
got such a strong reaction it extended the live local broadcast from 30 to
60 minutes. Stations held more than 140 workshops and training events.

Twenty-five of the stations did projects with local branches of the Alzheimer's
Association and many with aging and health agencies.

More than 500 activists reported holding Alzheimer's Association house parties
on broadcast night — the largest advocacy drive in the association's
history, says Splaine. The group told PBS that the program prompted more than
14,000 letters to Congress urging increased research funding.

Some stations distributed hundreds or thousands of information packets,
while others narrowed their focus. On the advice of local experts, WCMU in
Mt. Pleasant, Mich., organized a teleconference to train rural physicians
in Alzheimer's diagnosis, illustrated with pretaped enactments of mental exams,
says Linda Dielman, program/outreach manager.

In Kansas City, Mo., KCPT targeted caregivers who don't often seek help
from social service agencies — African-American and Hispanic caregivers
and children who find themselves in that role at least part of every day,
says Nick Haines, executive producer.

KEET in Eureka, Calif., organized training for Pet Partners therapy —
taking dogs to Alzheimer's sufferers, who enjoy and benefit from petting the
animals, says Claire Reynolds, the station's outreach chief. The local humane
society will continue the project.

Outreach efforts around The Forgetting conveyed a lot of information,
says Evan Leach, a consultant who filed the evaluation for NCO last week.
Caregivers reached by outreach said they felt less isolated, better able to
empathize with Alzheimer's sufferers. In surveys and interviews they even
showed signs of attitude change, saying they would be more likely to share
caregiving duties with others, he says.

But he found no evidence that outreach could change people's behavior over
the long term — easing their stress, for instance. For such changes,
the communication would have to be more intense, sustained and specific, according
to Leach, a nonprofits specialist at West Chester University, near Philadelphia.
Outreach planners may need to decide that changing behavior would be great,
but their realistic goal is education, he says.

Twin Cities PTV began working on its Alzheimer's project more than two years
ago, but had moments of quick acceptance. When Gerald Richman, national production
v.p., suggested the project in 2001, Boak remembers, they started talking
about people with the disease. His mother has it. Her mother does, too. Her
grandmother and mother-in-law had it. And millions more have it, or will.
"We thought it was something PBS needed to do," Boak says.

Then in June 2002 MetLife Foundation agreed to underwrite it within an hour
— "a once in a lifetime experience," she says. It backed program
and outreach and even suggested places where she could spend more money. The
project budget grew to $2.5 million, with more than half devoted to outreach,
promotion and the website.

How will Boak and other national producers follow up? Chris Siefert in Montana
would like national producers to offer a program on aging health issues every
month. Failing that, it could be done at least once a year, she adds.

Boak says she may update The Forgetting as research advances, but
the station's also pursuing outreach projects on behalf of classical music — to
bring people back to concert halls. And in the area of health, she's planning
a national special on obesity — a widespread and grave health risk, like Alzheimer's,
that many people don't understand.